HAPPY BIRTHDAY!

Happy Birthday to you! Happy Birthday to you! Happy Birthday dear Ruthie! Happy Birthday to you!

Ah, what we week we have had!

Before I get to the fun, birthday stuff I want to give an update of where Ruthie is, medically speaking.

Ruth's plication of her right diaphragm went as planned on Thursday. There were no major issues.


Ruthie taking a nap before her OR visit! First time sleeping on her belly!

(Oh and don't mind the date on the pictures, the AM/PM mode is messed up!)

She was extubated last Friday.

Ruthie was having a few issues with breathing last Saturday. Her lungs looked more junky and she was breathing much faster and working harder.
So Saturday afternoon, Ruthie was re-intubated!



Feeling a bit better, even with a tube in!


By, Sunday her numbers already looked better. They felt that she just needed a little more time to recover from her plication.

Monday morning hit and the tube was ready to leave. However, we had a scheduled heart biopsy for Tuesday. We felt, and the doctors, agreed that it was not worth pulling the tube to replace it the next day for the heart cath.
So instead of pulling the tube, we went to the Cath Lab a day early!

Ruthie's heart biopsy went well. Her pressures are the lowest they have seen from her EVER! WOO HOO! The biopsy results also came back saying no sign of rejection!

Ruthie was extubated on Tuesday. She was moved to high flow nasal cannula at 10L. She is receiving respiratory treatments every 4 hours. She now is "vested".



She honestly loves the treatments. They shake her up for about 20 minutes.



Then on Wednesday, it was her BIRTHDAY!


Welcome to the party!



Thank you so much CICU staff for decorating her door! HUGS!


And the board in her room


Her birth moment, 9:59am. I found it rather comical that she was crying during that time. It was a nice flash back to me hearing her cry for the first time:)




She was much happier after we got dressed!


Princess Ruth E Yarbrough

She had quite the flow of visitors in and out all day.
Everyone wanted to say hello to the birthday girl and of course check up on the cake!



I made the pinkalicious cupcakes!

Becky, from Child Life, gave Ruthie her first pair of high heels!



Ruthie loved all the attention!
She seemed amazed by all the decorations!


Her CICU bed.





The back of her door!


Her window!

As a special treat, the CICU allowed cake, cupcakes, and many visitors in her room! Ruthie was treated like a princess. She was able to have her grandmas, grandpas, aunts, uncle, mommy and daddy in the room with her to sing Happy Birthday! Her cousins sent love from the Sibling Playroom. They also sent an amazing video to Ruth!

(It is posted below!)

So we all found a pitch, not the same one of course, and sang to Ruthie!
Happy Birthday to you! Happy Birthday to you! Happy Birthday dear Ruthie! Happy Birthday to you!


And Ruthie tried her first pinkalicious cupcake.


She was a little confused with the whole cake idea!

But, it's her party and she can cry if she wants to!

Once she tasted the icing on her pacifier, there was no turning back!






It was amazing. Ruthie really enjoyed herself.
As she started getting settled in for the night, she was all smiles.




Unfortunately, our excitement for the week does not only come from Ruthie's 1st Birthday!
Yesterday, Thursday, Ruth's chest x-ray showed that her right lower lobe of her lung collapsed again.
Right now we are trying a various of respiratory treatments. We are "vesting" her every four hours. Ruthie is also inhaling different antibiotics during her "vest" treatments through a face mask. It is a humidifier mist that she inhales to help break up any secretions.
We are also working on her nutrition. We want her to be as strong as possible so she can start clearing her lungs herself. She is now back up to 20 mils an hour of continuous feeds. Her goal is 28 mils an hour. We are slowly working our way up. She seems to be tolerating the feeds fine thus far.

Long term...
So where does this put us long term?
Well we are still unsure. There are a few options. We are hoping we can optimize her nutrition and make her stronger to compensate for her paralyzed diaphragm. However if we are unsuccessful with this course of treatment, we will start turning to the pulmonary team. We will consult with them and figure out where we need to go next. It is a possibility that we may need to turn to Ear Nose and Throat. If we start to turn towards them, however, that means we are seriously discussing a tracheal tube. The trach would be placed in hopes of making it easier for us to help Ruth clear her lungs and optimize nutrition. The trach could be in for 6 months to a year.

I am not going to sugar coat this, I am scared! I am fearful. I am nervous. I am worried. I feel as though we were so close, so very, very close to the "end" of this all and now WHAM! (Sigh) We have a new, serious issue to discuss.

All I can do is step out on faith. I will pray, knowing that God will provide. It is in His hands. We are here to live out His plan.

Please continue to pray for us.
We still have a long road a head of us. Pray that Ruthie can continue to be a fighter. Pray that she can grow stronger and clear this lung stuff on her own. Pray that we all have the courage to face the next steps.

I feel as though I need to say Happy Birthday to you all as well. You have been here through it all. It has been one miraculous year. You all deserve a pat on the back, a heart-felt thank you for praying her and us through this year.
Thank you! Thank you! Thank you!

HUGS!
The Yarbrough's